Published on 12, July, 2020
Anyone know of any good resources on these subjects? I.e. not descriptive stuff but info on how to help from the outside in the role of parent/carer to young adults? Getting desperate here but reluctant to involve services because they tend not to be very autism friendly or aware.
We're still struggling with all of this. :( How on earth can parents help or support an adult son or daughter who is in a state of almost total withdrawal and how can they get help or support for themselves when the situation has become chronic, (however it's termed (fatigue/burnout/shutdown/catatonia)?
On the one hand there are first person accounts of burnout and recovery that seem to focus on a more episodic kind of burnout which eventually fades if the person is given rest, few demands, empathic understanding etc. And there are third person accounts that are more medicalised and refer to "catatonia" but which seem to be describing many of the same experiences (I'm thinking of Amitta Shah's book) and enlisting the help of services (where are these?).
But what is there for families where the person themselves is too withdrawn to seek help or engage to any degree and services have also withdrawn, on the basis that the person themselves is making an autonomous decision to refuse help and they'll step in when the person is ready (they're not showing any signs of this and it's been YEARS!). Where can families turn or do we just have to live with this indefinitely with no support?
Is there anyone we can consult about this? Most help seems to be geared towards younger children, not adults still living in the family home, but our youngest age of diagnosis is 26 (i.e. beyond the age where many services seem to just halt).
Hi Jenny. I have just joined this community today and was very interested to read about your struggles regarding burnout with your son. My son is 17 and is very stuck currently in an autism burnout following a breakdown and loss of community support a couple of years ago. He has since become very stuck in completing his daily routines needing them to be done with a certain person - not always available who he has become dependent on since the support loss. He doesn't engage with anyone currently apart from myself which is mainly on his terms. Current professionals involved don't understand at all and just blame my parenting.
You are the first person I have come across who seems to be experiencing a very similar situation. If there is anything you can advise or direct me to I would be most grateful!
Hello there and welcome to the group. I think that, although autistic burnout isn't much mentioned by diagnosticians or NHS staff generally, it comes up quite often within autistic communities. I'm still struggling however, because much of this is first person accounts of how an individual managed to come through whereas what I need is third person accounts of how families or carers helped someone through.
I did get a few pointers from the North East Autism Society, who provided me with the following links, which might be useful if you haven't already seen them:-
I would say that Kieran Rose is the most useful and informative person ont his subject, so it might be worth following him on Facebook or looking at his Autistic Advocate website. But, that said, most advice is simply to reduce demands and be very supportive and empathic.
What I actually think we need is someone (probably someone who is themselves autistic) with some expertise and experience in this area who can sit down and guide and advise us on how to help/support and how to improve our family dynamics and increase our son's feelings of safety and belonging. We do our best but we've only known that we are a neurodivergent family for the past few years and certainly had no idea when our sons were growing up. So some damage has already been done. Over and over, I think, which is hard to come to terms with.
Although Jodie Smitten works with school age children, it might still be worth a look at her resources as she's done a lot of work in this area too.
I'll have a think to see whether I've come across anything else that is useful but really we can't say we've found our way through yet and it's now been several years. :(
Hi Jenny.
Thankyou so much for taking the time to reply.
I will definitely take a look through the links you've sent. I do agree that we can learn the most from actual autistics but I think like you so far I just have the reducing expectations and demands and giving time.
Although Jodie Smitten's Burnout First Aid course focusses on school age children (£8 from her website) some of it is applicable to older children and adults and you can get the gist from various youtube videos. E.g. https://www.youtube.com/watch?v=ZjaeP-Gf9uk&t=5907s.
It might also be worth zooming in on any talks by Dora Raymaker, although unfortuantely the research int his area seems to be in its infancy. She's in one of the talks on Kieran's website, though, if you scroll down here: https://theautisticadvocate.com/autistic-masking/
Aucademy and Ausome Training are also worth a look, I think, plus the Gecko.Community for under 25s.
But really, after all my sifting and searching, I'd still like to sit down with a professional who can help us work through severe chronic burnout in adults and the various effects within the family as well as on the individual. I'm not sure such an individual exists and, of course, access to such services would be complicated by the need for individual autonomy and confidentiality such that, if an individual makes a capacitous decision to refuse all help, the family can do very little.